The period of uncertainty/not knowing (pre-diagnosis)

2014: Ethical dilemmas faced by carers and people with dementia

Background

Noticing differences and difficulties

This section is about the period of uncertainty which often precedes a diagnosis of dementia. It is the time when people start to have concerns about certain difficulties they are experiencing in their everyday lives (e.g. forgetting things, not being able to do simple tasks, losing their way, feeling confused and finding certain professional tasks difficult to accomplish). Sometimes, it is the person who is in the early stages of dementia [1] who has such concerns, but sometimes they lack awareness or are in denial (i.e. are not ready or willing to face the problem). Consequently, it may be relatives, friends, work colleagues or outsiders who notice that they are having difficulties or seem to be acting out of character.

Dealing with difficulties amidst the uncertainty

Most people would be embarrassed about not being able to use the remote control for the television or make a coffee, or about having difficulties driving or forgetting their children’s names. It is therefore understandable that people often try to save face by covering up their difficulties, making light of them or finding coping strategies. At the same time, the constant fear of people noticing their difficulties can be stressful and may result in people with dementia avoiding social contact and withdrawing from some of the activities they used to enjoy. Sometimes friends and relatives help to cover up such problems either intentionally or without actually realising. As difficulties increase, people with dementia may have concerns about needing help, what this implies and how they might be perceived by others.

Fears of making dementia an issue

Some people may suspect that their difficulties are a sign of dementia and start to worry about possible future consequences (e.g. will they lose their jobs, might continuing to work put other people at risk, what about their mortgage or life insurance, will they still be eligible for travel insurance, will they lose their driving licence and how will they manage without it?). Sometimes, the difficulties experienced are so perplexing that people worry about their mental health (e.g. asking themselves whether they are “going mad”) and about how they will cope, especially if the problems worsen. Such fears may result in some people not wanting to consider that they might have dementia.

Realising that such difficulties are not normal

People who have personal experience of dementia or have heard about typical symptoms of dementia may suspect that this is what they or their loved ones have. However, the early symptoms of dementia are frequently and wrongly attributed to normal ageing. Friends and relatives who spend a lot of time with the person with dementia are ideally placed to notice subtle differences which outsiders might overlook, especially if the person with dementia is trying to hide their difficulties. On the other hand, difficulties often develop very gradually and may sometimes be more noticeable to someone with less contact with the person concerned (e.g. someone who only visits once or twice a year). Carers sometimes notice changes, and normalise or discount them, only realising in retrospect that they suspected something was wrong (16).

Deciding to consult a doctor

Some people consult a doctor straight away. Others find it difficult to accept that the problems they are experiencing are not “normal” or may be afraid to consider the possibility that they might have dementia. Readiness to consult a doctor may be hindered by

lack of awareness,

denial,

the perception of dementia as a stigma,

accompanying fear of devaluation and discrimination,

a negative experience of dementia,

exposure to negative portrayals of dementia (e.g. in the media),

the belief that nothing can be done,

fear and anxiety of illness and death.

Nowadays, there are several treatments which reduce the symptoms of dementia and different types of support are available which enable people with dementia to remain active within the community for many years with a good quality of life. Nevertheless, doubts, fears, lack of information and negatively biased portrayals of dementia may delay timely diagnosis and lengthen the period of uncertainty.

Ethical issues during this period of uncertainty

The main issues during this period of uncertainty, which might have ethical implications, include the following:

whether people with dementia should tell other people (e.g. employers, friends, and relatives) about their problems,

whether relatives and friends should help conceal such problems,

whether relatives, friends or concerned outsiders should confront people with dementia about their problems,

whether people with dementia should consult a doctor about their problems,

whether relatives (e.g. partners or children) should mention the difficulties experienced by the person with dementia to that person’s doctor.

[1] We are using the term “person with dementia” in this section even though, based on the situations described, it would not yet have been established that the person had dementia.

Vignette

Jack started off his working life as a manual labourer on the docks but after several years’ night school, he obtained qualifications in accountancy, was taken on at “Harpers and Jones” and gradually worked his way up to the position of senior accountant. He is now 62 and very popular with his colleagues who appreciate his kindness and sharp wit. He has worked with numbers almost all his life but in the last year has started to have difficulty with some tasks. On two occasions, a colleague has highlighted a mistake which he has attributed to a lack of concentration.

Last week, he walked into someone else’s office and sat down. Everything seemed strange and he was puzzled. His colleague came in and asked him what he was doing at his desk. He joked that he was trying out his seat as he had heard it was more comfortable than his own but he was visibly shaken. On another occasion, he went down to the kitchen to get a coffee but the pot was empty. He came back without one as he couldn’t work out how to make a fresh pot. When asked, he stated that he had changed his mind.

People have started to discuss his behaviour amongst themselves. There have been a few jokes about “senior moments”. His boss has also made the occasional comment. His colleagues are starting to get worried that he will lose his job, which would affect his pension rights. But they don’t want to offend or embarrass him and don’t know how to broach the topic or in fact whether they should. Meanwhile, a few are keeping an eye on him and trying to cover up for some of the difficulties he is obviously experiencing.

Secretly, Jack is terrified that he is losing control and has started to take work home in order to double check. He has always prided himself on his professional achievement and ability with figures and feels that people will lose respect for him if they find out he has dementia. Some might laugh at him, some might not take him seriously any more. Would his friends still want to go for a drink with him, he wonders. He wants to confide in his wife but something is holding him back. His mother had dementia and he fears that he is also starting to develop it. He doesn’t want to imagine his wife becoming his carer.

At home, Jack is forgetting conversations and making mistakes. His wife, Maureen, has suggested he goes to the doctor’s to get a check-up but he is reluctant. Last month, when he and his wife went on holiday, although he has always been the one to navigate in the car, he got hopelessly lost. Again she suggested going to the doctor’s and again he refused and was quite indignant about the idea he had any undue difficulties. She felt a little hurt by his reaction and interpreted his denial as a lack of trust in her. She is worried about him and doesn’t know what to do.

His daughter came round last week and they went to a local football match together. It wasn’t far but they went by car and he drove. He took a few wrong turns and then stopped the car and just stared ahead. He looked devastated. He had no idea where he was. His daughter understood and just looked at him and thought, “Oh Dad, what are we going to do?”

Ethical commentary by Prof. Jan Oyebode (United Kingdom)

In this vignette we see some of the ethical dilemmas people may face when someone they know, be it a colleague or a relative, shows possible signs of dementia. A number of Jack’s colleagues have spotted mistakes but when they have drawn them to his attention, he has laughed them off. They are worried enough to be talking with each other about him although they are holding back from raising their concerns with him directly.

Their dilemma seems to arise from a sense that if they talk with him, they may embarrass or offend. In holding back, because they don’t want to dent his self-esteem, they seem to be following the principle of non-maleficence (i.e. avoidance of harm). One might also argue that they are recognising his vulnerability in this situation and by covering up for him and ‘keeping an eye’ on him, they are protecting both his privacy and his dignity. Furthermore, the solidarity they are showing, as part of the same workforce, is a demonstration of inter-dependence. It seems he has been viewed as a good and helpful colleague over the years, and so their protective response is informed by narrative and demonstrates reciprocity for all his kindness. They are showing they are dependable colleagues who can be trusted to support Jack and uphold the value of relationality.

However, not telling Jack may also provoke tension because his colleagues may not be comfortable discussing him behind his back. Although they are showing they can be trusted to cover for him, they are not showing they can be trusted to tell him the truth. Also they may also feel they have a responsibility to uphold workplace standards. In this sense, non-maleficence and respect for privacy on one hand, are coming into conflict with honesty and conscience on the other. Indeed, although their actions may be seen as maintaining trust with Jack, they might be seen in quite a different light by their boss. S/he might view them as untrustworthy for not bringing Jack’s difficulties into the open. However, perhaps they value their protection of Jack’s dignity, more than that of honesty, as long as the mistakes aren’t too bad.

At home, his wife and daughter are also concerned, especially about him losing his way when driving. Their dilemma is connected with how hard to push him to seek help. They may feel they’ll undermine his autonomy and self-respect (dignity) if they insist, especially as his response to their attempts so far have been rebuffed. However at the end of the vignette, we see a type of ‘landmark event’, in which his daughter is present at a point when Jack cannot cover up his problems. Maybe at this point, she has an opportunity to be honest with him about the need to seek help, whilst also showing compassion for his despair. This shows the value of waiting for the right moment in order to preserve trust but also be true to one’s conscience about the need for honesty, and also of being discerning about when outside help is required.

Ethical commentary by Dr Mark Schweda (Germany)

Why is it so hard to admit to oneself and others that something could be wrong? What keeps us from seeking clarification and certainty when we are concerned with an unsettling suspicion? How can we come to the right decision amidst all this confusion and anxiety?

Fearing the diagnosis of a serious disease that can affect one’s whole future life and wellbeing appears completely understandable. Jack must be terrified at the prospect of losing his much-loved wit and admired professional skills, his recollection of people, projects, and stories that define who he is, his sense of orientation and his ability to lead an independent life. Yet, we usually believe that burying one’s head in the sand is no solution and that facing the truth is the right thing to do. After all, learning that nothing is wrong would bring immediate relief. And if there actually were something, knowing for sure would open the possibility of getting active and making decisions. Sure, there still is no curative therapy for dementia. Nevertheless, there would be things to envisage: Existing treatments are more effective at an early stage. Moreover, one could start planning for the future: organize living and care arrangements, make financial provisions or complete an advance healthcare directive. All in all, the knowledge might lead to a new, more conscious perspective on life.

Ultimately, the question of wanting to know or not is a very personal one. The answer depends on your individual disposition, your view on life, and your concrete situation. However, you should not have to make such a grave decision completely on your own. It is vital to be able to confide in your partner, your next of kin or a close friend. They are the ones to accompany and support you. They can offer advice and consolation. Apparently, Jack worries that his environment might start seeing him in a different light: not as the caring husband, but as someone in need of care and a potential nursing case; not as the responsible father, but as a helpless child. He seems to be afraid that people might treat him differently: not take him seriously anymore, second-guess his every decision, act patronizing and overprotective. Maybe he is scared that they might even begin restricting his freedom, hiding his car keys, or not letting him go out on his own, anymore.

Dementia is one of the most abhorred diseases of our days. It is loaded with negative symbolism. The dominant medical perspective focuses on decline and deficit. In consequence, dementia is described in terms of loss of self, identity, and personhood. In a society that praises rational self-determination as its central value, this amounts to a form of social death. Accordingly, the media and the public discourse resound with grim images such as “living death”, or equate affected people with “vegetables” or “zombies”. This malignant imagery not only fuels our horror of the disease itself beyond all reasonable measures; it also causes fear of the reaction of others, of stigma and discrimination, of not being treated as a person, experiencing disrespect, or even being denied fundamental rights.

Choosing to avoid or postpone a serious diagnosis is understandable and legitimate. There is a right not to know. However, it is important not to make this decision for the wrong reasons, driven by shame or anxiety, but as the result of a careful, well-informed and balanced deliberation. It is our moral responsibility as relatives, colleagues, professionals, and citizens, to create a situation where this becomes possible.